Question
QUESTION: GOOD EVENING.
I am a 28 y/o female, no previous medical problems. no diagnosed autoimmunities in family members. I am active duty military with a demanding lab career.

15 months ago I started noticing my hair had become very thin in a matter of one or two months. Nine months ago I became very fatigued, the only way I could describe it was the nauseated feeling of being awake for 36 hours, when in reality sometimes it was only 4 hours. I had a very sudden intolerance to physical activity; my normal activity level was very active, both during my work day and a normal 2hr work out at the gym 5 days a week.

I performed my own urinalysis and saw renal epi cells with a SG of 1.010. I saw a doctor with no remedy besides sleep medication. my quantity and quality of sleep were both a problem (for years I worked off of five hours a night) with the sudden fatigue I was exhausted but not sleepy so it was still diffacult for me to get more rest than I normally did.

with the fatigue also came body aches (muscle soreness for no reason) and  joint aches (as if something heavy were pulling on them to make them sore).
For Many years I have had an unquenchable thirst, this interested my doctor so he ran a few tests and came back with a very low ADH (non fasting: 0.0 and 12hr water fast: 1.7) my thirst was ucompanied by frequent urination. I am seeing an endocrinologist and have a pending 24hr observed water deprivation study to be accomplished in two weeks. I was refered to Rheumatology with a positive ANA 1:320 with speckled patter and SSA of 560. My CRP and ESR both came back normal, C3, C4 and CD50 all normal.

My rheumatologist refered me to opthamology and they did that horrible paper in the eye test wich came back normal, I have a pending appt with ENT for a lip biopsy. So my rheumatologist thinks it may be SS.

There are many symptoms that I didnt really think of as symptoms and just as "life" the thirst, occasional dry eyes (feels like a handful of dirt in them!)sudden tiny fluid filled blisteers on the edge om my eyelid to make it feel as if I have something in my eye (quite uncomfortable until it is released),  dry itchy skin (sensitivity to most soaps and lotions), severe headaches, occasional ring shaped dry pathces on my upper arm and even less frequently on my cheeks.

I look in the mirror and dont recognize myself for the thinning hair, dark circles under my eyes and lost elasticity in my skin, I look and feel as if I have aged ten years in a matter of 20 months!

I eat very health, sure an occasional cookie of serving of pasta but I make most of my food from scratch (whole foods) and buy organic whenever I can, I eat mostly fruits and vegtables but keep very strict  records of my daily intake to monitor vitamins and minerals. I also take a daily vitamin (prenatal). I take my BB temperature every morning, even though I wake up sweating, burning up hot and terribky thirsty my temp ranges from 96.9-99.9 but normally in the 97.0-98.9 range.

I am frustrated that it seems I cannot do the things i usedto be able to, I come home from work and am too tired to think of house chores. when I am tired, I get an all over uncomfortable feeling that is jittery without a movement, it feels as if I cannot stay still. the only thingthat helps it taking off everything I am wearing and then showering... even then I am uncomfortable to sleep, as if laying on my side is too much energy to keep my body posed.. and then in the morning my body hurts if its been in one postion too long.

I am sure that most of these are "normal" things but I wanted to be sure to share everything that might be related simply because I've noticed that sometimes the little things help with answers.

per your request I am not looking foir a diagnosis, I have faith in my doctor for that. Please just read my concerns and help me feel like I am not "making it up" or being intolerant of normal life !

Thank you for your time and attention.

ANSWER: No, all of this sounds way too familiar to be made up!  I'm sure in working with your doc and through research, you've found how difficult it is to diagnose many of the autoimmunes, systemic scleroderma included.  For both of the major symptoms, skin tightening and Raynaud's phenomenon, there's a small percentage of exceptions.  I tend to tell people who are worried about this that 95-97% of us (I've heard and seen both numbers used) have Raynaud's, so if you don't you have a good chance of it NOT being scleroderma.  You're doing a great job of being alert to possible new symptoms and you have confidence in your doc.  I'm sure you'll get a diagnosis as soon as it's possible.

What to do in the meantime about that terrible feeling that you can't do everything you used to?  It may be true, at least for awhile.  I was terribly sad when I had to stop running.  I've sung in choirs all my life and it was like taking a piece of my life away when I couldn't deal with evening rehearsals and the profound fatigue that came on after work.  Eventually, all I did was work and drag myself home to the couch.  

I shifted my focus to taking care of myself, mentally and physically, resting when my body said to and not fighting it until I dropped, for instance.  Also, trying to eat well and at least take a walk with the dog, even though I felt asleep on my feet.  Fortunately, he was old and arthritic!  Mentally, find others with autoimmune diseases for support - if not a "live" group in your area, there are many online.

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QUESTION: Thank you for your quick response to my question. What a wonderful answer; to feel like I am not overreacting. I might need to clarify, when I said the Dr suspected me of SS I meant sjogrens syndrome... Ive seen it in type like that and was too ecocentric to think it could mean another autoimmune as well!

My concern is when to push myself past normal everyday things and when to read and interpret the signs that my body is telling me to slow down! I have always been the kind of person to push myself... Tired? Work out more... That was me for a long time. When I feel like I do it's just as confusing as frustrating.

More than anything I feel for my husband: we've been married less than a year and it seems he"s seen the worst f it! I feel nothing like the lively (fit) woman he met less than two years ago.

Than you for your advise

Answer
Sjogren's can cause the fatigue and muscle pain you're talking about, that's for sure.  I completely understand the concern for your husband and feeling like your lively, fit life has been taken away.  I was working and training for a marathon when things started for me, and years later can no longer run, have fallen (hard!)out of shape, and work very part time from home. I became so guilty feeling I shut my husband out.  I'd tell him to "go on without me" when there was something I couldn't do but I came to find out he'd feel abandoned.  DON'T cut him out of this process - not only does he need to help, he CAN help, by encouragement, helping to spot symptoms you may not be aware of, and taking some of the daily tasks from you when you can't keep up.  Keep him in the loop, but don't let the disease take over.  Get out when you can, go for gentle walks, as much of the fun, "normal" things as you can do.  Find a support group and build up your support system so that he's the most important helper, but not the only one, so he won't get burned out.